| June 1, 2004 Tuesday We hope everyone enjoyed the holiday weekend. It's just crazy to think it's already June. Even though the weather didn't cooperate as much as we would have liked, we were still able to have some time outside with Paige. We've been going on daily walks and she was excited when we saw two deer crossing the road not far in front of us. She also pointed out that the moon was out and the sun was "napping." I told her I loved her to the moon and back and she just looked at me like I was crazy :) She's about the same as she was last week - but maybe a bit weaker. With her comfort being our main concern we've had to increase the morphine a small amount - she's now receiving 3.5mg an hour continuous and she can also have 1.5mg every 6 minutes if needed. The areas on her forehead that were radiated are definitely smaller and there's been no new swelling. It seems that when we get one area of pain under control another new area quickly follows. The last few night she's been complaining of pain in her back- something she's never complained of. Her appetite is not good and she barely eats anymore. She's become so thin that we're afraid to weigh her. Her favorite the last few days is vanilla ice cream and of course we give her all she will eat. One of the hardest things now is that she wants Mommy all the time and won't let anyone else do anything for her. This is so hard for Andy and the grandparents since they also want to be close and comfort her. She just becomes upset so easily. The other day I told her that I missed her laugh and smiles - it just broke my heart when she said, "me don't feel like smiling." It's just so wrong and unfair. We did take a trip down to Grandmas house and many aunts, uncles and cousins came to visit and even though Paige slept most of the time everyone was so glad to see her. She did manage to stay awake to enjoy a few bites of a banana split. We try to visit daily with our friends and new neighbors, the Kryznarich's. Paige and their oldest daughter Jackie are just a few weeks apart in age and just love playing together. On Saturday night we went to their house for a campfire. It was a great time and Paige really perked up for an hour or so making s'mores. Even though she didn't eat them she loved putting them together. On Monday Melanie brought the girls over and they had a little picnic on the back porch - Paige gave Julia cheerios and Jackie donuts and gummy bears. Paige even walked a few steps when she was handing out the goodies. We were so happy when they decided to build so close to us - Melanie and I were thrilled that the girls were going to be able to grow up together - we were going to be able to do all the "Mommy stuff" together at school and so on. It's just so sad to think that Paige will miss all the fun things that little girls do. Paige's nine-year-old cousin Ashley, who's been more like a big sister, is such a brave little girl. While we've talked with her about what's happening, she has to be so confused. Ashley is so good with her and always tries to keep on a smile - but you can see the sadness in her eyes. This is just so hard on everyone. We're hoping for more days where Paige feels good and can enjoy everyone around her. We so appreciate the support that everyone has given us. Thanks for your phone calls and e-mails. While we weren't able to talk to everyone personally or respond to your comforting e-mails - they have not gone unnoticed or unappreciated. Thanks to all of you! Love- Andy, Sandi & Paige |